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Table 4 Symptom control and communication as reported by bereaved relatives within the Regional CODE™ surveya

From: Quality assurance for care of the dying: engaging with clinical services to facilitate a regional cross-sectional survey of bereaved relatives’ views

  Hospice (n = 82) Hospital (n = 218) Community (n = 54) All organisations (n = 354)
In your opinion, during the last two days, did s/he appear to be in pain?
 Yes, all of the time 6 (7.6) 26 (12.1) 5 (9.4) 37 (10.7)
 Yes, some of the time 37 (46.8) 81 (37.9) 25 (47.2) 143 (41.3)
 No, s/he did not appear to be in pain 36 (45.6) 107 (50.0) 23 (43.3) 166 (48.0)
 Missing 3 4 1 8
In your view, did the doctors and nurses do enough to help relieve the pain? b
 Yes, all of the time 64 (84.2) 116 (64.1) 34 (73.9) 214 (70.6)
 Yes, some of the time 11 (14.5) 50 (27.6) 11 (23.9) 72 (23.7)
 No, not at all 1 (1.3) 15 (8.2) 1 (2.2) 17 (5.6)
 Missing 3 3 1 7
 N/A, s/he was not in pain 3 (3.8) 34 (15.8) 7 (13.2) 44 (12.7)
In your opinion, during the last two days, did s/he appear to be restless?
 Yes, all of the time 6 (7.5) 38 (17.8) 7 (13.5) 51 (14.7)
 Yes, some of the time 41 (51.2) 103 (48.1) 30 (57.7) 174 (50.3)
 No, s/he did not appear to be restless 33 (41.3) 73 (34.1) 15 (28.8) 121 (35.0)
 Missing 2 4 2 8
In your view, did the doctors and nurses do enough to help relieve the restlessness? b
 Yes, all of the time 39 (71.0) 73 (44.5) 27 (64.2) 139 (53.3)
 Yes, some of the time 16 (29.0) 66 (40.2) 14 (33.3) 96 (36.8)
 No, not at all 0 (0.0) 25 (15.2) 1 (2.4) 26 (10.0)
 Missing 3 5 1 9
 N/A, s/he was not restless 24 (30.4) 49 (23.0) 11 (20.8) 84 (24.3)
In your opinion, during the last two days, did s/he appear to have a ‘noisy rattle’ to his/her breathing?
 Yes, all of the time 14 (18.7) 37 (17.5) 6 (11.1) 57 (16.8)
 Yes, some of the time 36 (48.0) 66 (31.3) 26 (49.1) 128 (37.8)
 No, s/he did not have a ‘noisy rattle’ to his / her breathing 25 (33.3) 108 (51.2) 21 (39.6) 154 (45.4)
 Missing 7 7 1 15
In your view, did the doctors and nurses do enough to help relieve the ‘noisy rattle’ to his/her breathing? b
 Yes, all of the time 32 (64.0) 42 (38.5) 16 (53.3) 90 (47.6)
 Yes, some of the time 15 (30.0) 47 (43.1) 9 (30.0) 71 (37.6)
 No, not at all 3 (6.0) 20 (18.3) 5 (16.7) 28 (14.8)
 Missing 8 10 4 22
 N/A, there was no ‘noisy rattle’ to his / her breathing 24 (32.4) 99 (47.6) 20 (40.0) 143 (43.1)
The nurses had time to listen and discuss his/her condition with me.
 Strongly agree 50 (63.3) 68 (31.9) 30 (58.5) 148 (43.1)
 Agree 26 (32.9) 78 (36.6) 16 (31.4) 120 (35.0)
 Neither agree nor disagree 1 (1.3) 24 (11.3) 3 (5.9) 28 (8.2)
 Disagree 2 (2.5) 27 (12.7) 2 (3.9) 31 (9.0)
 Strongly disagree 0 (0.0) 16 (7.5) 0 (0.0) 16 (4.7)
 Missing 3 5 3 11
The doctors had time to listen and discuss his/her condition with me.
 Strongly agree 55 (69.6) 63 (30.0) 31 (62.0) 149 (44.0)
 Agree 24 (30.4) 87 (41.1) 14 (28.0) 125 (36.9)
 Neither agree nor disagree 0 (0.0) 23 (11.0) 3 (6.0) 26 (7.7)
 Disagree 0 (0.0) 21 (10.0) 1 (2.0) 22 (6.5)
 Strongly disagree 0 (0.0) 16 (7.6) 1 (2.0) 17 (5.0)
 Missing 3 8 4 15
Did any of the healthcare team discuss with you whether giving fluids through a ‘drip’ would be appropriate in the last two days of life?
 Yes 23 (29.1) 77 (36.7) 10 (18.9) 110 (32.2)
 No 41 (51.9) 107 (50.0) 38 (71.7) 186 (54.4)
 Don’t know 15 (19.0) 26 (12.4) 5 (9.4) 46 (13.5)
 Missing 3 8 1 12
Would a discussion about the appropriateness of giving fluids through a ‘drip’ in the last two days of life have been helpful? 4
 Yes 27 (47.4) 83 (57.2) 14 (32.6) 124 (50.6)
 No 30 (52.6) 62 (42.8) 29 (67.4) 121 (49.4)
 Missing 6 19 1 26
 N/A, we had these types of discussions 19 (25.0) 54 (27.1) 10 (18.9) 83 (25.3)
Did a member of the healthcare team talk to you about what to expect when s/he was dying (e.g. symptoms that may arise)?
 Yes 47 (58.8) 100 (47.2) 29 (55.8) 176 (51.2)
 No 33 (41.2) 112 (52.8) 23 (44.2) 168 (48.8)
 Missing 2 6 2 10
Would a discussion about what to expect when s/he was dying have been helpful? b
 Yes 29 (72.5) 92 (77.3) 23 (82.1) 144 (77.0)
 No 11 (27.5) 27 (22.7) 5 (17.9) 43 (23.0)
 Missing 8 17 1 26
 N/A, we had these types of discussions 34 (45.9) 82 (40.8) 25 (47.2) 141 (43.0)
  1. amissing data has been presented as numbers but not included in the percentage calculations
  2. bIn addition to the ‘missing’ participants who did not provide an answer to these questions, the response options ‘N/A, was not in pain / s/he was not restless /there was no ‘noisy rattle’ to his / her breathing’ were also removed from sample when calculating the overall percentages